the suckiness of unpredictable pain

Living with my back condition is weird. I live with chronic pain, but it’s the potential for pain that is difficult to deal with, more than the level of pain I have on a day to day basis. I live with the certainty that if I push myself and my body too hard, I will experience pain, sometimes very severe, debilitating pain. The problem is in determining what “pushing myself too hard” means. Some days too hard is spending too much time on the couch watching TV. Some days I can walk around a convention all day and be mostly ok. (Although being corseted means the level of what I can do before I start paying for it goes way up. Hence the corsets.)

Today was one of the days when I didn’t predict my pain. My husband took the day off and we ended up going for lunch and to the movies. I don’t get to the movies a lot, often due to having lots of things scheduled on the weekends. Other times it’s because when we go into town to run errands, by the time we’re done with our errands I don’t have the endurance to sit through a movie (or hang out with people or whatever.) But it’s been a while since I found going to the movies to be really painful.

So I felt good today and didn’t feel the need to wear a corset just to go to eat and to the movies. But halfway through The Winter Soldier I started being uncomfortable. But the last 20 minutes of the movie, I was bent over with my arms wrapped around my knees trying to stretch my back and make it through the movie. I even waited through the credits for BOTH secret scenes, while stretching my legs over the seat in front of me. I was good. I made it through.

When I finally stood up, I couldn’t walk immediately. It wasn’t pain so much as my muscles simply refusing to shift from sitting to standing mode. My lower back muscles clench up when my back flares and sometimes prevent me from standing at all. But I could take a step after a few seconds, though my husband was already far ahead of me by then. I walked out of the theater slowly, practically dragging my right leg behind me. (It was the right side that was acting up. It’s got more damage than the left and more nerve compression according to my last MRI.)

“I bet you’re glad I drove around to get 15 feet closer parking NOW,” my husband joked. I was, although sitting in the car was actually more painful than the walking. I thought about how guilty I feel when using handicapped spaces, not that I currently have a valid permit. If I had one, I wouldn’t have used it today. But by the time I came out I needed it. That’s the problem with having a disability that is constantly in flux. A lot of the time I kinda wish I had some better defined disability. Something other people could see, and that was predictable. Then I wouldn’t feel like people were judging me when I can’t do something, or for not working. I wouldn’t feel vaguely guilty when I call myself disabled, because I feel guilty for the times I can do things.

But then there are times like today, when I get hit out of nowhere with pain, bad pain that won’t go away. (Though on my personal pain scale I’d say this is something like a 6. Not near the worst possible, just enough to be really severely unpleasant.) This wouldn’t have happened to me on an average day because I have shaped my days to avoid this situation. So I start feeling like I should have known better than to do something so silly as to go to a movie. But I have to stop that kind of thinking, because I should be able to. But am I going to be less eager to go see the next film in the theater? Yeah.

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